Mommy, I don't feel good...

 

His sweet tummy is not feeling so well and hasn't been treating my sweetness nicely for over a month now.  He isn't tolerating his formula which is his main source of nutrition.  Finn eats by mouth as most of you have seen but his body doesn't digest or absorb food so, he needs his formula to work.

 This past Thursday Finn started having abdominal pain that had him doubled over and in tears.  Our sweet boy hardly ever actually complains about something specifically hurting.  After all of our normal "treatments" we decided it was best to take him to the ER to rule out anything major.  All that was found was a bladder infection.

The next day brought vomiting and a slight fever, so we brought him to the peds office and they said that he had the stomach bug that has been going around.  BUT he is spilling massive amounts of ketones in his urine which means that he is burning his own fat and going through his reserves.   The vomiting has passed but we are left with a very tired boy who wants to play and wants to join in but he just doesn't have the energy. 

 HE NEEDS FORMULA!!!!

So you ask what's next?  Well we are actually having to fight to get a doctor to change his formula.  Everyone agrees that this needs to happen but everyone wants another doctor to handle it.  GI wants the metabolic doctor to change it because he doesn't know about PDCD, Metabolic wants GI to do it because that is what GI does and  Pediatrics is will to do anything to help our boy but readily admits that he has no idea what to do.

All the while our sweetness has lost more weight that we care to admit.

This very situation is one that we are unfortunately familiar with and it is familiar for more "mito families" than you would think.  It is a place where powerlessness runs free.  This is why I have poured time and energy into bringing awareness to this disease.  In my mind it is unacceptable that Finn's doctors don't know how to treat him so they pass him off.

Andrew and I are working hard to get all the doctors to work together (isn't that something we learn in childhood) to come up with a plan for Finn.  We are feeling our limitations, there are only so many hours in a day, so much money, so many phone calls we can make.

We need prayers that we can get some action.  Our sweet boy needs help, NOW.